Bringing Patient Voices to Personalized Medicine

January 24th, 2013

Gwen Darien

Gwen Darien, Director of The Pathways Project, makes the compelling case for ‘patient-centric’ rather than ‘industry-centric’ thinking in personalized medicine.

Of all the frequently employed models for cancer research and care, and the theme of numerous conferences and meetings—particularly those which focus on personalized medicine—perhaps the most compelling as well as the least understood is patient-centered research and care. As a long-term cancer survivor and a long-time advocate, I am regularly invited to provide the patient perspective at these conferences and meetings. As I look around the room, I can’t help but notice that I am generally one of the few ‘patients’ in the room. Often, I am the only speaker giving the patient perspective. Patient voices are notably absent from these discussions about patient-centered research and personalized medicine.

In these venues, the patient is often portrayed and viewed as a two-dimensional figure—a faceless, flat cutout at the center of a diagram. Yet, as we all know, patients are multi-dimensional people with diverse values, experiences and desires who are members of a greater community. We are more than our diagnosis and our life is comprised of much more than our disease.

The great promise of personalized medicine is to deliver the right treatment to the right patient at the right time. Delivering the right treatment is only possible when the right patient is known—known beyond biology and known within the context of a multi-faceted life. To develop this knowledge we need to understand both the individual and the greater community of which she is a part. We must engage patient voices in open, transparent discussions about issues that are important to them personally, as well as to consider these issues’ impact on society. We must understand how personal and community values inform conversations about value and how we look at the cost of treatment and the continuum of hope, risk and benefit. We need to ensure that personalized medicine does not increase the unacceptable health disparities that continue to exist, and that now and in the future we can deliver the fruits of research to everyone diagnosed with cancer.

People are the true center of health care and must be engaged as active partners with shared accountability, not as passive recipients of health care services. With the development of personalized medicine there is the potential to engage in truly patient-centered research and care—delivering the right treatment to the right patient at the right time. But this potential can only be realized if patient voices are a vital and valued part of dialogues and decision-making in personalized medicine research and care.

As a cancer survivor herself, Gwen Darien brings a wealth of personal and professional experiences to her position as a director of The Pathways Project, a radically inclusive organization that creates communities and catalyzes movements that put patients at the center of health care. Darien was editor-in-chief of CR magazine and director of the American Association for Cancer Research Survivor and Patient Advocacy Program. She was previously the publisher and editor-in-chief of MAMM. Darien is Chair of the NCI Director’s Consumer Liaison Group. She is a member of the Board of Directors of ENACCT (Education Network to Advance Cancer Clinical Trials) and the Strategic Advisory Group (SAGE) of the Center for Patient Partnerships at the University of Wisconsin.

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